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HELP

Unballanced8
Posts: 6
Joined: Jan 2014

Hi, I'm new here. Have NHL, had my 5th round of chemo one week ago, today! just to let you know a little about myself so you will understand my question and need for advice. I am 39yrs old, diagnosed at age 38, after changing doctors. Had the same doc for 4yrs, kept getting sick, my old doc would treat me for a sinus infection, bronchitis, etc. Of course I'm no doctor so i let her continue to give me multiple antibiotics, steroid shots, steroid packs, rocephin shots,etc. As my condition worsened I woke up one morning and I absolutely had no energy what so ever so I told my husband I was going to call his doctor(who is a family friend) and try to get an appt with him asap. So, I called and he managed to get me in late that afternoon. We talked, I told him my symptoms and concerns, he did some blood test and scheduled me for a chest x-ray the next morning. Had the chest x-ray early the next morning, as I was getting in my car to leave the hospital, my new doc was calling me. He said "STOP, I just got the results from your x-ray and I need you to go back in and get a CT scan, I've got it all set up." I go back in have the CT and on my way home, doc calls again. Says "I need you in my office at 430 this afternoon, and bring your husband," he stresses "DO NOT COME ALONE!" Well, that conversation confirmed my fears before he even told me. Again, I'm no doctor but I know my body and I had been feeling for awhile that something serious was wrong with me. Well, of course 430 came and even though I had felt for sometime that I was very ill, nothing can prepare you for the horrible news that you have cancer! It was like a huge kick in the stomach. At first I was handeling it pretty well. I had to, I had to keep going and try to put the pieces back together. I have 2 wonderful, amazing children to live for, to breathe for, and a husband that absolutely adores me. He and my kids have definitely been my rock. My second rock that is(God first). So after all the other tests, PET scan, lung biopsy, bone marrow test, etc, then came the pathology report that confirmed that the lymphoma had been growing in my right lung for 18 to 24 months and I also have actual lung cancer as well. The tumors are not just confined to the lymph nodes in my lungs but tumors also exist in my lungs. The first couple of weeks after I found out I have cancer my mother and sister would try to help with the kids. My husband works 3 jobs and he can't do everything. Now, they never come around. When I'm really really sick and need them, I call them and they always make up excuses why they can't come help me with the kids when my husband is working. It's like they have the theory "well she needed us the first couple of weeks but it's ok now, she's got the hang of it now!" I don't know what to do anymore. I have run out of options with them. There are some days I need help  from them but they brush it off like it's nothing. If anyone has any advice for me, please HELP! And thank you!!

Unballanced8
Posts: 6
Joined: Jan 2014

Can anyone help me with my previous question please?!?!

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

  I read your post earlier and believe me I am not ignoring you. I just do not have an answer. There are others on here that will be here to help you shortly. We are all sufferers of this Damn disease and can relate in one way or the other. It can be a disease that makes you feel like you have been deserted by people. Sometimes people, even family members deal with it by ignoring it at times. I am not sayng this is your case at all. I don't know. Be patient and someone will have some answers. I know it is asking a lot when you have this diagnosis. I know that you feel lost right now. Yes and I know how this chemo can drag you down. We all went thru that as well. Some worse than others. My journey was certainly no walk in the park and I know yours is not either. If there was a definite diagnosis go to your about me page so others can see it and you will not have to repeat it every time. Stay calm,  John

Unballanced8
Posts: 6
Joined: Jan 2014

Thanks so much John, I apologize if I made you guys feel like I was pushing for someone to answer me or give me advice, like right now! I didn't mean to make it seem like that. I hope everyone will forgive me. I guess I need to research the way this page works a little more! Thank you!!

Rocquie's picture
Rocquie
Posts: 579
Joined: Mar 2013

I'm not ignoring you either. As John suggested, your post leaves many questions before suggestions can be given. How old are your children? I wonder how much help you are needing? Diapering? feeding? Watching so you can rest? Where do your mother and sister live in relation to you? Same town or do they need to travel? Do they have jobs too? What about your church--any members there you can ask?

Have you talked to your doctor or a nurse? Perhaps there is a social worker who can find help for you. Also you can contact the American Cancer Society for assistance. I'll make some contacts for you, if you are unable.

I am very, very sorry that you feel abandoned and alone when you feel your lowest. Many here can relate to that feeling. I know I do. I asked for help from immediate family several times and while it was promised, it never came through.

Thinking of you. . .

Rocquie

 

 

Unballanced8
Posts: 6
Joined: Jan 2014

Well, let's see Rocquie, I'm going to try to answer all of your questions! My mom and sister both live 15 minutes from me. Yes, they both have jobs, they are both "come and go as you please jobs!" Just to throw you an example: My mother hasn't worked all week, and hasn't even visited me. I asked her to come tonight but she said she wasn't feeling well. I don't always need help with things, usually the first few days after chemo is the hardest. Even then I don't need constant care! No I don't need help diapering or feeding. My children are 15 and 9. They like to do things on their own but still I dont love the idea of my kids trying to cook without me or my husband in the kitchen with them. I do thank you for your reply!!

Unballanced8
Posts: 6
Joined: Jan 2014

Hi Rocquie, just wanted to elaborate on my reply from the other day. Both of my kids are very independent, they go to great lengths to take care of me when no one else is around. Like I said earlier in my previous reply. I only need someone for a couple of days after my chemo session (physical help). The other help I need is purely emotional and if that makes me weak then I guess I'm weak. I am learning to handle this horrible disease on my own, as I know I can't depend on someone else all the time. I am getting my independence back! Again, thank you for the reply from you and from everyone else as well!!!!

Rocquie's picture
Rocquie
Posts: 579
Joined: Mar 2013

Needing emotional support to help you through treatment of a serious disease does not make you weak. Maybe you can participate here at these boards more; I have gotten so much support here--and still do. I have experienced much lonliness since I have been sick. Other than my husband, I have had NO help from anyone in any way. And I could have used it.

I would have loved for someone to offer to go to the grocery store for me, to pick up a prescription, but I had to rely on my husband to stop on his way home from work. I would have loved for someone to vacuum for me or help lift the laundry basket. I'm not going to re-hash the broken promises I received.

The best thing about the worst time of your life is that you get to see the true colors of everyone. 

Turn to us. Let us help you. Ignore the dust bunnies as they will still be there when you feel better. And you will feel better. And you will find a strength you never knew you had.

Love and hugs,

Rocquie

 

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi,

 I'm so sorry you are feeling stranded and alone. Have you actually sat your mom and sister down and said what you have said here? If not,do so. Face to face and hold nothing back is my advice. If their actions continue to remain the same, then you will probably need to seek outside help. Best friend...neighbor...extended family...church, etc. You can also speak to someone at your clinic that might be able to steer you in the right direction. I pray you find help soon, but in the meantime please remember we are here to comfort and help as best we can. Keeping you in my prayers. Love...Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63)

Unballanced8
Posts: 6
Joined: Jan 2014

Thank you for your suggestions and kind words. I have talked to my mom and sister face to face! That didn't work out like I'd planned at all and I don't even know why it surprises me, they have always been attached at the hip. My dad was always there for me but God decided He needed him more than I did. Again, thank you for your reply And for your prayers!

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Welcome to the site, Unballanced8.  I agree with Sue's advice.  If possible it might help to organize.  You can make a list of things you would like help with and try to set up a schedule for your Mom and sister.  I realize there will be "unscheduled" events/times and you can talk about how to handle those.  Also, the 15 year old could probably help out a lot as well.  You are stressed enough with the cancer and everything that comes with it - let alone trying to run a household where your husband works 3 jobs!  You might have to let some things go for now and stick to basics in the household as far as normal chores.  Giving the kids things to do would probably help them psychologically as well.  You might pick two days when your husband is away the most for assistance so he's faced with less when he comes home.  When your Mom and sister cook at home, perhaps they can make extra to bring over on occasion to alleviate that chore.  These are just some ideas.

I hope things get better and keep us updated.

Hugs - Jim

 

embracinghope
Posts: 3
Joined: Jan 2014

Hi...I am new here...first time posting...much of ur story kinds mirrors mine a bit...what ive come to terms with is that as much as we may need the help at times..it is not always forthcoming...and truly u cant make your loved ones more attentive...I had to to really adopt a new normal...super prioritze...decided early on that minimal was okay in everything...there were no standards I needed to live up to...it was what it was...when help came I was grateful...if it didn't...we got fast food...lived in an okay kept house...my only goal was to survive that chemo ......,I guess it was easier for me to just lower expectations...so my soul wouldn't be in continual disruption...u cannot control other peoples words..actions..or lack of...but u can control how u react...if u belong to a church or any clubs...please let them know u r struggling...often people just need to be told...my least favorites were the remarks...just let us know if u need anything....really?...the best were those who dropped a meal...drove me to treatments...I was so grateful...my heart is so touched by ur post...because I am facing a possible relaspe...the care and concern that was there the first time doesn't seem to be there now...it is a lonely feeling...I think sometimes...people just want to help...but it is distressing for them..they r uncomfortable..don't know what to do.or s.so dont be too hard on them..God knows tho...

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi embracinghope, and welcome to the group...

 Just wanted to say I'm sorry you may be facing a relapse. After reading your about me page, it looks like you have had 3 years remission since finishing chemo? I think the hardest part for all of us is the possibility of recurrance and praying it won't happen anytime soon. I was Dx in 2010, and with each scan (yearly), I get anxious wondering if all is still ok. I'm due for my next CT scan in April and keeping my fingers crossed. Please share back what you find out and remember we are here for you. Keeping you in my prayers and thinking positive thoughts. Best wishes....Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63)

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